Description

The Jackson Heart Study (JHS) is a large, community-based, observational study whose 5,301 participants were recruited from among non-institutionalized African-American adults in urban and rural areas of the three counties (Hinds, Madison, and Rankin) that make up the Jackson, MS, USA.

Available Data

Duke is a JHS Vanguard Center, allowing Duke to offer JHS data to Duke investigators free of charge, although PACE fees may apply. External researchers must obtain JHS data access from the JHS Coordinating Center (jhsccdc@umc.edu).

In addition to the JHS Vanguard Center data, DataShare also has linked Medicare Fee-for-Service claims data for the JHS cohort.

Please see the JHS Data Access page for more information about the steps and requirements for data access.

JHS Limited Data Set

The 2014 - 2021 files are available through Duke:

• Annual follow-up (AFU)
• Analysis
• Ancillary
• Cohort
• Events
• Supplementary

Duke does not have genetic data, though there is a directory and codebook for it within DPHS-PACE.  JHS data that are not available through Duke may be requested directly from the JHS Coordinating Center.

Linked Medicare Files

We also have an identifier crosswalk for JHS ID to BENE ID.

CMS has approved linkage to the JHS cohort, Area HealthCare Resource files, US Census data, NPI/NPPES registry, Provider of Service file, and UMLA Metathesaurus.

Cost to Researchers

• DataShare does not charge researchers for study-specific JHS data access.
• The JHS account may cover some regulatory and data access costs at the discretion of the JHS Vanguard Center PI.  However,
  • Researchers using JHS data (unlinked or linked) may be responsible for PACE fees.
  • Researchers using linked JHS-Medicare data may charged the DataShare annual infrastructure fee.

Governance

• JHS data does not have its own cell size suppression policy but is subject to the CMS cell size suppression policy when linked to Medicare claims. 
• IRB approval:
  • Researchers whose aims align with the JHS Cardiovascular Workgroup (CVD WG)'s IRB application may be added to Pro00101989; they do not need a separate IRB application for their studies. The JHS CVD WG's project manager or regulatory coordinator will make this determination.  See JHS Data Access.
  • Researchers whose studies have their own DUHS IRB approvals do not need to be added to Pro00101989 to access JHS data.
• Researchers may only access JHS-linked Medicare data under CMS DUA 54827, which provides data to Duke and the JHS Coordinating Center.  A DUA amendment may be necessary to expand scope. See JHS Data Access.
• Publication guidelines, including required acknowledgement and disclaimer language
• The descriptive data and codebooks from the JHS website should not be used in any publications, abstracts, posters, presentations, or any other research product.

Resources

• Data documentation is available on the JHS Website and with the JHS data in Duke PACE.
• Timeline of study evaluations
• Coming soon: Data Administration (authorized users)